Sunday, May 3, 2009

Sunday Afternoon Notes

I still don't have much more to report today. We just got back from visiting Gaines again. His oxygen seems to be consistently hanging around 40% and his carbon dioxide doesn't seem to be budging much BUT, he's still on CPAP so that's a blessing. I'm trying hard not to be disappointed that he's not doing fabulous on it and ready to be weaned to breathing on his own. In my head I know that's ridiculous, but in your heart you hope that your baby is the one that's going to prove them all wrong. I guess its just that he just moved so quickly from the ossilator to CPAP that I hoped he was going to continue moving forward at the same pace. I know we'll get there, I've just got to be patient. Easier said than done.

They did decide to give Gaines caffeine this afternoon. I believe it's supposed to prevent the "bradys" or episodes of bradycardia. I'm starting to learn the NICU lingo. I think our nurse today was surprised to hear that I knew where his carbon dioxide level should be. I SO wish I didn't know it. I wish I was worrying about a sleeping schedule or even colic.

It's a dreary day here so it kind of lends itself to a sullen mood. I'm trying not to let myself sink into that. I've done really well with my emotions and spirit since last week but I'd be lying if I said I didn't get down from time to time. Nothing major, but last night I decided that I really wanted to hold my baby and I just can't right now. He's not quite there yet but one day soon I hope.

A bright spot...Beau and I were out in Georgetown yesterday (or one day recently...who knows anymore) and we saw some little preemie clothes at the baby Gap. They were SO cute and tiny. I haven't bought anything yet but I can't wait to be able to put some clothes on this little guy. Shopping for baby clothes just seemed like such a normal thing to do. Georgetown is the furthest I've been from the hospital and that was even a stretch for me. It's walking distance so its really not that far but I struggle with getting too far away right now.

I guess that's really about it for now. Please just continue to keep Gaines and our family in your prayers. Please pray for a healthy heart and lungs.

Love to all,



Daxton's Personal Assistant said...

Hi guys,

I know it's frustrating, but Gaines is doing REALLY well. It doesn't seem that way when it's your kid, but outside looking in, he's doing great. He's maintaining on CPAP and that's huge, and even if he has to go to a nasal cannula before room air, he's still doing great. The CO2 is very frustrating, I know, BUT, kids learn to compensate... The human body is an amazing thing, and preemies are even more unbelievable. (My son's CO2 lived from 80-100 for MONTHS, but his PH compensated and that just became his norm.) With time and growing lungs, it gets better! And I know what you mean about wanting your kid to be the special one, and trust me, there will be areas that leave the docs scratching their heads and saying, WOW, he's doing really well with that... It just might not be his lungs right now, but trust me, it will get there!

We spent 8 months in the NICU (23-weeker) and saw a lot of families come and go. As hard as things are for you guys right now, one day you'll hit that down-hill slope they talk about, and things will start moving really fast...

In the meantime, we're praying and sending good thoughts your way!

The Ellis Family said...

Het Brit and Beau - Mom is bringing some preemie presents to Gaines next weekend!

Hang in there, guys! It will get easier. We love you all so much!!


Lesley said...

He really is doing well, it's just such a long road. My dad, who's an MD says it doesn't matter how fast you get there, it just matters that you are going in the right direction :)
So think direction, direction :)

Kelly said...

Praying for y'all sooo much right now. I can't even imagine what you're going through. Remember, God is good all the time and He will give you grace and strength sufficient!

In His love,

Jess said...

I just wanted to share a couple great websites for preemie clothes:

They grow fast, though...before you know it he'll be outgrowing stuff. It's hard to be patient when you're the one having the urges to do "normal" mommy things, but hang in there. Gaines IS making progress!!!

Collier Chronicles said...

i have been thinking what I can do for you! I can definately do a little light shopping for Gaines.

Marva said...

Hang in there Brittany!!! We are still praying. John was 10 days old before I got to hold him (32 weeker). Mason was the healthier one (they are twins). You are dpoing just fine and so is Gaines!!! Love, Hugs and Blessings!!!

Stephanie said...

It won't be long and you'll be able to dress him all the time :) praying for your little boy!